I am a 68 year old male diagnosed with p-vera almost a year ago. I had a series of phlebotomies and have been taking pegasys for almost 6 months (present dose 90 pcg).
A month ago I saw a dermatologist who found a melanoma on my left calf. Two weeks ago I had surgery to remove the melanoma at the calf and the sentinel lymph node. Clean margins were found. Prior to surgery, the surgeon recommended that I stop pegays. We placed the question to my MPN doctors and they resisted a bit maintaining that there was no studies showing that pegasys would interfere with healing. We decided to continue the pegasys.
I am 16 days out from surgery and saw the surgeon today. I have pretty serious swelling from ankle to knee which she characterized as not typical for this type of surgery. It seemed like I was going to get pretty mobile in a few days but things have gone the other way. This hasnt been pleasant and recently obtained some crutches.
Well interferon is an immune booster of some type - so it makes sense to me that it could be overzealous in its response to the flesh removal. From what I have read, it seems like it wouldn't be too bad for my p-vera treatment to discontinue a bit (maybe another phlebotomy if I had to). Also does anyone know anything about how long pegasys stays in the body. Has anyone encountered anything like this?
thanks everyone.....
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gvibes
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Delay in wound healing is not something I have heard of associated with Pegasys. Unless the PEG has significantly depressed your leukocytes I am not sure what the mechanism of action would be in that regard. I would run the situation past a MPN Specialist familiar with PEG and some of the more unusual reactions to it. I would suspect this may not be PEG related, but who knows. I would wonder about a relationship more directly to the MPN, but it may well be unrelated to the MPN or the PEG.
Most doctors, including hematologists, are not familiar with how people with MPNs react to things not how the meds used to treat may cause issues. Especially when it is something more unusual. The proclivity for inflammatory response can certainly cause a number of problems. I hope you have MPN Specialists on your care team rather than regular hematologists so you can get an answer to your questions.
Regarding a short vacation from the PEG, best to consult with your care team on that. I expect it would be OK, but your HCT will likely start to rise. perhaps a few weeks off would be OK.
Please let us know what you find out and how things turn out.
Hunter. I did consult with my MPN doc prior to surgery and he said pretty much what you said. He hadn't experienced patients with delays in healing and there wasnt literature related to that. Given that I am experiencing a delay in healing puts me in a different place now. I wonder some of the same things as what you alluded to - the difficulties of studying everything during drug trials and other mechanisms of the disease and drug interaction that are complicated and hard to understand and could contribute to this. So I am at the point where peoples anecdotal stories and experience is of interest to me, with unexplained mechanism - hence the question on the board.
It becomes tradeoffs, I guess when you have multiple stuff going on. I normally inject pegasys on thursday evening. I am collecting information prior to my next injection to determine if I should skip a dose, consisting of: 1)I will see if I improve over the next week. 2)I will converse with my MPN doc (who earlier didnt have a problem with skipping a dose). 3) I will try to research through the internet. 4)I will try to see if anyone experienced something similar on this board.
Thanks Hunter, you are a great resource for all of us. You helped me clarify my approach.
Hi, sounds very strange. I would think it is associated with the surgery and the surgeon would be able to sort it out. When did the swelling start, what is the character of the swelling (soft and spongy, hard, painful or not, red or blue discoloration, how swollen, hot to touch?). I would wonder about lymphatic fluid accumulation due to node removal, infection, or possibly a blood clot in the leg. I would doubt it related to Inf. but I don't know. I do think it would be up to the surgeon to find the cause. Maybe check for Homan's sign in the calf. Good luck to you in finding a cause it does seem to be going the wrong way.
Thanks. I did get an ultrasound checking for blood clots and it didn't find any. there is not signs of infection. It is definitely painful, not hot too touch, some discoloration around ankle. The fluid accumulation due to node removal is interesting - hasn't been discussed - I'll ask my surgeon. What is Homan's sign? My surgeon seems to think now that the swelling is related to the interferon (her opinion) but says it can be managed - it just will take time.
Homan's sign is to test for deep vein thrombosis in the lower leg. I think there is a lot of information about it on the internet as well as how to do it. If your ultrasound did not show any clot you likely don't have one as far as I would know, I do not know if you could have one without it showing on an ultrasound. Maybe someone else on this forum who has had surgery while on interferon can weigh in about unusual swelling post op. Could it be a little subcutaneous post op bleeding from movement combined with the PV, they say we can clot or bleed? Good luck for a quick resolution. Let us know how you progress.
Your approach is very well considered and methodical. While I would be more suspicious that this has something to do more directly with the surgery, an unusual PEG response is not something I would ignore. As Sherlock Holmes said “When you have eliminated all which is impossible, then whatever remains, however improbable, must be the truth.”
Your reaction to wound healing while being on Pegasys could certainly be related to Pegasys. I'm on a low dose (22.5mcg-PV-Jak2) I'm considered a lightweight on any drug! I stayed on Pegasys while getting my booster and had a horrible reaction (severe knee pain, fatigue, brain fog, total arm pain of shot location) that lasted almost 3 days. My first 2 pfizer shots I went off all drugs until the vaccination process was complete and I had NO reaction. Listen to your own instincts regarding what you think is going on and do what you think you need to do. I actually went off Pegasys for two weeks after the strong reaction so my body could recover from the booster shot without consulting my doctor. Sure my HCTS and other blood levels will go up but I'm also cognizant that the Pegasys does hang around in the bone marrow for a length of time. I know this because I had to go of a previous higher dose (45mcg) for 6 weeks to decrease rising ALT numbers and it took awhile for my HCT counts to rise. Remember we are all different with how we respond to drugs and it is paramount for you to listen to your own health instincts. Always always advocate for yourself and do what you think is right, after discussing issues with your doctor. Kerry from Alaska
In my experience, yes. I’ve been on Peg for 15 months and have neutropenia - a low neutrophil count - as a side effect. I’m currently undergoing dental surgery and my dentist has repeatedly told me that I’m healing very slowly. My haematology healthcare team have confirmed that this neutropenia and slow healing are due to the Peg and have reduced my Peg dose. I hope your inflammation has eased and your mobility improves.
Thanks. Interesting. I’ll look at my neutrophil count. I have skipped dose. My story got more complicated- in hospital now. Really have no idea if pegasys is part of this, but it is something I can do with not too bad consequences. Write update when I get home.
Update- I am now 4 weeks out from original surgery. Shortly after my original post, the swelling diminished somewhat near my calf (watched 3 days of ryder cup with leg up). However, the same weekend, my temperature spiked to 102.5 degrees F and my other incision (which seemed completely healed) near my groin started swelling. The doctor put me on antibiotics. Saw the doc a couple days later - still swelling and now red - the doc sent me to the hospital for IV antibiotics. Still looking bad after a day or so, they aspirated, found infected fluid, and performed surgery to clean it out. Samples were taken to figure out bacteria strain - takes a couple of days, found more unusual gram neg bacteria and then got me on the correct antibiotic. Sent home after 4 days, with wound looking much better. According to the surgeon, she has only seen an infected lymph node one other time in 7 years.
That was fun... Meanwhile I have stopped my pegasys temporarily until this under control. I'll have skipped two weekly doses as of today. Coincidentally, my hematocrit and other measures were showing lowest numbers yet - seems like pegasys cranking last month or so lowering my numbers. Since the dose seems high now, MPN doc fine with suspending injections for a bit and probably restarting at a lower dose. We'll check CBC and do a phlebotomy if needed.
Have no real idea of cause. Surgeons like to stop chemo or other medications that could affect healing. My MPN doc says of all the other treatment options, interferon is most likely the safest in the post-operative setting. Other drugs to treat PV can be associated with poor wound healing and immunosuppression infections. I stopped pegasys temporarily - even if its the best - it may not be that for me and my particular nuances.
So be thoughtful and careful with any surgeries. Interested in any experiences....
Just found this old post whilst searching for information on whether Interferon affects wound healing! I have ET and have recently switched to Peginterferon after the efficacy of a combination of Hydrea and Anagralide became insufficient. I'm on 180mcg having phased up to that dose over the last few months. I have noticed that my skin has become dry, especially on my hands and that any minor wound I suffer seems to take an age to heal and/or turn into a crack that won't heal. I pulled some skin off my finger over 2 weeks ago creating a very small raw patch, it now just keeps cracking and bleeding and just does not want to heal even with using salt water bathing and creams. I've never been like this before and always been a "quick healer" so it seems too coincidental that this has developed so quickly after starting interferon. Going to mention it to my consultant this week and will put a further post on if he sheds any light.
Hi. My wound eventually did heal but it took some time. Couldn’t tell relationships to Pegasus. I certainly think it’s possible that your healing issues are related to your Pegasus dose. I’d observe that the 180 mcg dose is high compared to what I’ve seen and imho will produce some significant side effects. A while ago my dose increased to 135 mcg and while I tolerated it, I asked my doc to lower it because of increased side effects. Eventually my levels were under control and brought it back to 90 which is much better for me. I think most docs start Pegasus low (maybe 45) and increase slowly over several months. It may take a year to get it right. I think 90 is a typical dose. So my advice would be to go slow with all this. Good luck.
As gvibes said, 180mcg is higher than most on PEG. While the high dose may be needed to reach good blood numbers, is your Dr certain you need to continue that much to hold these good blood numbers? Might it be ok to reduce at some point?
I went thru higher than needed HU dosing early in my treatment.
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